Need advice please

Thank you for taking the time to comment Dawn I can't tell what a difference that made to my day yesterday. I woke up feeling like I can't do this maybe it's easier just to give in to mental health, after reading your reply it inspired me to carry on so Thank you again. 

I was really upset when I posted the other day, obviously I was effected by the news of my eldest sister. I guess I was beating myself up for being so slow in possessing all the information I've collected over the years. 

I spent yesterday researching the autistic brain. I was amazed by what I learned and felt very disappointed that my training failed to teach me this. My eldest sister had a scan because of this rapid dementia but one of my other siblings also had problems last year and was sent for a scan. I found out yesterday that they both have brain shrinkage and they both have folate deficiency anemia. This is confusing for me because I become anemic last year so was put on folic acid, the course ran out and the anemia has come back, the only problem is I can't get out for a blood test. I'm going to ask to be sent for a scan because the autistic brain does shrink. I'm not sure if any of this is relevant but I feel I'm being pushed in this direction. I really hope you get to read this and thank you again. 

Thank you so much for that Dawn, you will never know what your recognition has done for me.

Yesterday was a bad day for me I think I'm having trouble possessing the information regarding my sisters health now. I guess Yesterday I was beating myself up for being so slow in working everything out because it's all been so very confusing for the whole of my life. Even trying to talk openly with my other siblings and constantly being shut up. I think I was angry with the company I've been working for over 8 years didn't even teach me the basics just skimmed over them. I really can't and I do struggle with this.

I know for my own health I need to concentrate on me but the more I learn about autism although it's a great and I mean great feeling for me because for the first time in my life I have felt less isolated, that word causes me so much pain and so does being misunderstood. When I think of either of those words my body goes into panic. Forever I have struggled with people be it family or friends. I was diagnosed in the 70's with dyslexia no one explained what it all I knew was from a young age I was going to be in a working group of boys. That's probably where I got the idea that I had been born with a boys brain, believe me I've looked into every possibility for this even though I might be the only person in the world who this has happened to. Anyway over the years I've been given different labels for different mental health issues a personality disorder, just purely because of what I know now are my communication skills. Things sound so right and intelligent in my head I try to stay with it but it's that look people give on their faces and you just know your on your own. I'm having to go down the mental health road yet again. 

I started to put bits together during covid. Covid was weird for me like most things I find in my life things that give me happiness can always most times have such a negative impact. This does confuse me, like everything and I mean everything I doubt myself and I hate this because it stopped me from doing or saying things that I felt I should have done or said. I think because I had no control and was led by the government I started to let go of certain controls and pressure that I felt from the world, I loved the outside how the wildlife had come back to life. It was good for me in so many ways yet it gave me other problems. Being told at work I was overeating openly lying to the residents. It was bad. I did what I could to reassure the lads and got them outside away from the other staff gradually getting scared as the realisation of what was actually happening in the world. The lads were petrified but staff were too busy with their own fears. I knew I was working there for my own reasons so I was more than happy to get outside with the lads but I got bullied by other members of staff, trying to encourage staff outside was such a big chore unless they could do what they wanted, not what the lads wanted to do outside but what the staff want to do. That's basically the thing everything works around the staffs needs. People being refused their first choice on where they want to go for their weekly trip out ie shop etc. Staff refusing to go to certain places so residents having to fit in with staff and they can't see it, the damage just that does. We then have a bad trip behaviour report done the lad made to feel like *** because he's lost control. He gets taken straight back home and punished, something being taken away. Is staff to blame? Management for dismissing what I see as dangerous things. Dangerous to the lads and the public. Believe me I've seen some so called behaviours and I've felt every second of it, people being pinned in corners spoken to like their children. It was so painful to watch and made me feel so ashamed inside because I still have my temper tantrums that my family seem to find amusing in some odd way. 

I guess I just have so much to come out that I just don't know where to begin. I'm feeling so happy and relieved inside. I'm so thankful to YouTube lol I wish I had learned through someone who has autism it just makes so much sense to me.

I have so many things I need to deal with personally. Working out my feelings and emotions. I know I have to push on, I know it's going to be hard. Even trying to explain to mental health why I am not able to leave my safe space, the thought of going out there is petrifying for me, yet they keep pushing for me to go. Ordinary I would cut off help. You would have thought at the point when I tell them that a month ago I had to pull my own tooth out. I grind my teeth and this had worsened towards the end of my time at work, what little sleep I was managing to get was very restless. I'm not giving up this time. 

A new staff member started and openly asked me if I had adhd, I don't know why but I took offence. I take offence a lot, probably due to high masking that I thought I had to perfection. I felt comfortable in work when it was just me and the lads, but some staff could make me feel so uncomfortable. They would run shifts on their own personal opinion but they couldn't even see it. My manager putting on the water works as way of manipulation so incredibly painful to see and they look up to her so much and she's literally having them run around after her and laughing behind their backs and bragging how she'd got him to do what she wanted. That same lad is in his 30's they have refused in 8 years to listen to me that maybe just maybe all his so called problems were due to his autism, he himself not having an understanding. He now has kidney failure. 

I lost my house 5 years. Priorities always struggled I still do I can't change it, I've tried and it's made me feel so very bad about myself. No one understands this. I got behind with my rent, I was on my own bringing my children up. It was a really hard time, parenting has been for me I need to admit that. I've always put my children first to me that's what I should do. I fell behind with my rent. I can't tell you how incredibly hard I find it, just making a call can take me sometimes over a week. This used to make me feel so useless as a parent and partner. The long a short of it the housing people sent someone out who I thought was going to help, she told me under the table I needed to stop paying my rent and save the money to go bankrupt and I could keep the house and all my debts would be gone. I was over the moon. I knew the house held so many bad memories yet so many good ones. I talked myself into being able to do what she had said, now I don't know what made me think for a second that I was actually thinking I could do that. Anyway the inevitable happened and I panicked. I tried to explain to the housing people but obviously the woman denied saying it. I lost my house one of my sons didn't talk to me for over a year. It was a very hard time for me and I'm only realising now what I left in the house because I was in such a panic everything went blank in my head. I felt embarrassed for what I did. I've built relationships with my children and they are now getting a understanding but they do have their own struggles.

I guess I came on here with the hope of being able to talk to like minded people. 

 Sorry for the book lol 

I forgot to say after covid I asked my g.p if I could be assessed for adhd. I had a call for assessment. Everything I said was normalised I felt totally confused and questioned myself through the whole conversation. Made me feel so much worse about myself. Anyway she said because of my age it would be very difficult to get a diagnosis and the waiting list was a year. I said I just wanted to talk to someone about it, she said she would put it forward and they would let me know. I waiting exactly a year, I heard nothing for that year so I called them only to be told I had been discharged from their services. This made no sense to me I thought I was waiting to see someone. After about a week I called my g.p and he said they had sent a letter saying they felt they couldn't take things further with me. I was devastated I felt so incredibly isolated. Now I think its all autism the more I learn the more I understand about myself. Now I have to wait another 18 months. I can't believe my g.p surgery didn't give me this information. 

I'm so glad to hear you're on a mission too, I can't tell you how good that feels. Thank you. 

Oh Boy! Bless you.

You seem to have discrimination all around you. Within your own family; your poor cousin, robbed of relationships with family members like you who might have been good for him, and he for you.

Errr, you don't specify who you worked for but indeed a lot of what we've seen on the BBC and Channel 4 of late is scary. Despite the 2009 Autism Act requiring their training, even those in autism units know NOTHING and such environments harm not help autistic people.

You are brave. Truely brave in standing up for what is right here.

If you think you too are Auristic, I wish you all the best with diagnostic process. The truth is everything and it's never too late. I was 56. It's changed my world. I only wish I'd known sooner.

There are other members of my family who are ND in one way or another. Two known Autistic cousins. One other met a premature death, thought to be mentally ill, but the descriptions of her behaviour date to early childhood and sound more autistic/ adhd to me...we'll never know because she's gone now.

Get to your truth for your sake and then scream to any one in a position of authority who will listen about what you have seen and know about the ill treatment of autistic people. Doing that in my own way too btw. Know you are not screaming alone. We are screaming together and together we can make a difference.

When I walked out of that building and believe me it was hard, I thought I had anger issues due to me having no control over my anxiety. I was so frightened I was going to have a heart attack or something and have no choice but to cut off contact with my family. Because I couldn't think of any other options at that time. I thought I must have really bad mental health issues. I now understand and just having a little understanding has made such a difference to me. I'm petrified of people who see themselves as normal but I don't want to lock myself away forever. Thank you. 

Reassurance 

Thank you for the reply. I suppose I just needed a little reasoning. I really appreciate it. 

Not too old to go for diagnosis. When I was assessed the Doctor said one of his recent clients was 76. 
Your experience with that company sounds quite traumatic, and you have done what you can by whistleblowing to the CQC. Hopefully they will inspect with these concerns. 

Apologies if this is inappropriate to post on here. Can anyone let me know please?